What Strategies Have You Tried Or Are Trying Now ?

[Dizzysillyak]

Hi Fellow Supine Geniuses .. : )

I'm always trying something new and am interested in what others have tried too. I thought I'd post my experiments and hope others might be interested in posting their experiments too.

I've been sick since 1990, but only started trying to heal myself since 2005. Prior to that, I took meds,

used a motorized cart and crashed a lot.

In 2005, due to uncontrollable bms and weight loss, I started with dietary interventions geared towards food intolerances and hypoglycemia and this helped quite a bit. Kidney stones later

landed me on the low oxalate diet. Which btw, helped my female pain .. Yay .. I'd been eating high oxalate foods for a couple of years by then and that's probably was caused the stones.

Later, I learned via testing that I had various nutritional deficiencies, inc b12, iron, chromium, etc

and treated those. At that point, I also learned that I had candida so I treated that and it appears to be under control. I just did another cdsa and will get the results Wednesday. I don't have any

obvious candida overgrowth signs tho. : )

Giving up caffeine in march stopped the constant internal vibrating feeling in my chest. I didn't

realize it wasn't normal until it was gone .. Lol ..

But, the reason I started this thread is because I've been in a flare for the past 3 months, probably started with celiac damage, and am looking for new ideas ..

Since my digestion had slowed, for the first 5 weeks i tried a vegan diet thinking that my inability to digest meat could be the problem. That was a mistake. I need meat .. I have hyperinsulinemia and the carbs in beans were too much for me.

Later, I figured out that taking mag citrate with my meals, paleo, solved my gastroparesis and constipation. It worked too well if you know what I mean .. Tmi .. I started drinking helios dairy kefir, a quart daily, and it's working as well and without the loose stools. I'm allergic to dairy but for some

reason my reaction is minimal.

Meanwhile, a few days ago, I started glucosamine/msm, doubled my pregnenolone to 20 mg and my dhea to 50 mg,

started taking dlpa and tyrosine again, and I'm back on the paleo / low carb / low oxalate diet.

I'm not feeling the urge to lay down all the time now but when I do the blood rushes back into

my upper body .. And I'm getting this after only a few minutes of being upright too. Rats ..

Sorry for the book. I thought this was going to be short .. Anyone else ? I would love to hear

anyone's experiences with the supplements I just started or increased .. Thanks .. D

[Kirsti]

When I first got POTS 5 years ago I tried all the usual medications for it, such as FlorineF. But, they all made me feel worse and I have not taken any medications since. I have seen a cardiologist, orthopedic doctor, ears nose & throat doctor, and a kinesiologist, but they didn't seem to help much. But I decided that I am going to get better no matter what so right now I am seeing (or have seen recently) biofeedback doctor, orthodontist (for TMJ), chiropractor, and I am getting advanced allergy therapeutics treatments. These last four may not have cured me yet, but at least they have helped. The biofeedback helps me control my blood circulation. The orthodontist and chiropractor have helped with neck and jaw pain, but they both believe that readjusting the neck area will increase the connection to my brain and heart. Even though I don't really have any allergies, I wanted to see if the advanced allergy treatments could help me with pots. The biggest improvement with the advanced allergy treatments is that I don't get as nauseating as much. They also recently treated my autonomic nervous system, so hopefully that will help, too.

I'm planning on trying everything until my POTS is cured, so I would really like to see how others are doing as well.

[songcanary]

Kirsti,

I am interested to know what exactly is an advanced allergy treatment? Are you referring to applied kinesiology? I am glad your nausea is better. I think that's the worst symptom of all!

[Dizzysillyak]

Thanks for replying kirsti and songcanary,

Like songcanary, I'd like to know more about your allergy treatments too. I have a lot of allergies

but as far as I know they're under control symptomwise as long as avoid gluten and soy. Just 2

weeks ago, i would've included dairy but I'm ok with the dairy kefir so I don't know what's up. Or

how long it will last. I have some phlegm in my throat that's new.

Biofeedback for circulation sounds intriguing too. My bp drops like a rock when I stand up

so any help here would be great.

Tc .. D

Ps. I just wanted to add that part of my reason for posting this thread is to let others know that sometimes we have to try a variety of protocals to find one that works for us. That's IF We find one.

And, imho, sometimes we have to settle for living our lives as best as we can and that's ok too.

I was told in the beginning of my journey to look at this as if I were unravelling an onion so I was

prepared for all the layers I've found. Granted, if I'd known anything about onions this would've

been much easier .. ; )

Edited December 5, 2011 by Dizzysillyak

[Kirsti]

This is what it says on my allergist's website (becomeallergyfree.com):

Advanced Allergy Relief of Arizona has Advanced Allergy Therapeutics (AAT) technology, Bioveda's BAX-3000, Bioveda's BAX Aura and NRG to holistically help correct your nervous system by reducing biological stressors, allowing you to no longer respond inappropriately to completely harmless substances, foods, or stimuli.

And this is the biofeedback program I use: https://www.heartmathstore.com/category/emwave-desktop/emwave-desktop-anxiety-relief

[lgtaylor100]

When I was a practicing therapist I used to use heartmath in my office. It is really good for heart rate variability. I forgot about it and may look into buying the program now. Thanks Kirsti for the suggestion.

[Dizzysillyak]

http://www.terrywahls.com/

I'm on the run right now but wanted to post this before I forgot again ..

someone here posted one of her videos and I watched it late last night .. I need to look at this closer to see exactly what this doctor did ... I know she recommends a variation of the paleo diet tho. This diet is really catching on ...

thanks for the info on biofeedback and allergies ...

I'm having a good day for a change so i'm having some fun and getting some stuff done ... tc ... d

[ramakentesh]

exercise - nothing works better according to a growing group of POTS specialists.

[Dizzysillyak]

Interesting idea rama.

Some if us are exercixe intolerant tho so this will make us worse. I'm not allowed to do the

treadmill test but I'm not exactly sure why. I got booted off and forced to lay down ...

And then there's pem (post exertional malaise).

As far as I know, Pacific labs has come the closest to explaning this.

I can't even ride a recumbent bike at a normal pace without my leg muscles going into

spasm.

I'm looking firward to the day when subgroups are taken into account in this diagnosis and

me and cfs.

Tc .. D

[toddm1960]

I've added or increased these to my regular morning meds:

2 grams of Arginine

5 grams of Creatine

5mg cialis

Each of these increase NO and vasodialation.

[ramakentesh]

exercise definately makes you worse before it makes you improve. atleast in my case.

[L4UR3N]

I am so frustrated with my doctor because he actually told me NOT to exercise (I keep ending up in the ER with SVT that just wont quit). I still do my recumbent bike though because I really believe that exercise is good for EVERYONE. Countless studies have shown the benefits of exercise in nearly every disease--even heart failure!

As far as what I'm currently doing to feel better--SOY! I am aware that many people have allergies or intolerances, and everyone is different. I can only speak to what has worked for me, and I can't even completely explain why. Estrogen does have a relaxing property on blood vessels through increased nitric oxide--maybe its just that simple--maybe its more complicated--all I know is that it works .

[Dizzysillyak]

I totally agree that everyone's body can use some sort of exercise. It's great for building muscles and endurance.

And I tried low impact exercise regimes several times and I built muscle and endurance.

BUT, this never helped me stand up longer (oh) or go upstairs without getting winded or have fewer petite mals

when upright ..

And each time I ended up in a state of chronic pem where I couldn't think clearly but I was determined to exercise .. Lol

In fact, the last time I went to pt, I had really bad pem. While I still had muscle strength

and could lift the same weight, I couldn't do as many reps. My muscle

recovery time was severely impacted. I spent 80% of that session resting on my back.

That's when it hit me that I was wasting the little

functional time I have ..

Tc .. D

[Dizzysillyak]

I've added or increased these to my regular morning meds:

2 grams of Arginine

5 grams of Creatine

5mg cialis

Each of these increase NO and vasodialation.

Interesting todd,

I'd read that arginine increased no but didn't know about the others. Arginine also causes herpes flares

so it's out for many.

Is this regime helping your dysautonomia ? I'm curios as to what symptoms are relieved by this.

I just started reading about vasodialation and vasoconstriction.

Thanks .. Tc .. D

[Dizzysillyak]

As far as what I'm currently doing to feel better--SOY! I am aware that many people have allergies or intolerances, and everyone is different. I can only speak to what has worked for me, and I can't even completely explain why. Estrogen does have a relaxing property on blood vessels through increased nitric oxide--maybe its just that simple--maybe its more complicated--all I know is that it works

Hi rissy,

Sorry to hear about the svt's.

Using soy for estrogen is intiguing. I'm allergic to it but I'm also post menopausal so maybe some

estrogen would help me too. Have you tried pregnenolone ? It's supposed to help with all hormones ..

I tested very low so I'm using it. I can't say it helps my dysautonomia but I feel more energized

and don't have as many hotflashes on it.

Tc .. D

[toddm1960]

I didn't include the 1,000mg of niacin also. Before these my HR and BP just continued to rise as long as I was standing, my HR would be 60 laying downm then 110 when I would stand....then 130, 150, 170, 200. Same thing with my BP. Now on these I seem to top out around 150 and my BP doesnt get above 170/130.......unless I walk upstairs or lift something. The arginine and creatine are part of my mito cocktail, but I also got this small improvement in my autonomic symptoms.

Just a side note on exercise, 6 years later I'm still trying and still waiting for any benefits. All its done for me is put me flat on my back 24 to 48 after doing it........it is like a chronic state of PEM or PENE. Glad it helps some but I can tell you it's done nothing for me.

[Dizzysillyak]

Wow .. Thanks todd. That's great info .. : )

I'm with you on the exercise. I used to atheletic but just

can't do it anymore. Although .. I recently moved to the beach and can swim as long as I take

frequent breaks where I just float. The chlorine in pools was too much for me but the ocean water actually makes me feel better. Rip tides can be a bit much .. Lol .

Tc .. D

[Dizzysillyak]

Next on my agenda will be to treat for h pylori and then parasites. I've had food poisoning 3 times in the last year and absolutely have to take strong probiotics daily and I still have multiple food intolerances after 6 years ... Overall, my gut bacteria is looking good but evidently not good enough.

So this may be the root cause of my dysautonomia, oh and pots. Granted I'll still have other problems like celiac, a seizure disorder, paget's, lung scarring, etc but I would really like to regain

orthostasis.

I'll keep you updated .. Tc .. D